A recent visit to specialists at SickKids hospital in Toronto resulted in some upsetting medical news for the Port Elgin family of Madison Bob, 7 months, who doctors are testing to see if she has potentially fatal craniosynostosis – a rare condition that causes premature fusing of her skull bones that could result in an abnormal head shape, abnormal facial features, possible visual impairment, sleeping impairment, eating difficulties, or an impairment of mental development combined with a significant reduction in IQ.

Madison, whose skull has several misshapen sections, was diagnosed at five months old after her family doctor found her skull bones were fusing too soon.

"Her brain will turn to mush and she will die without treatment." That was the stark message doctors gave Madison's mom, Destiny Bob, several months ago, and following a July 21 visit to doctors in Toronto, the family is now dealing with a potential diagnosis of Blue Sclera - characteristic of a number of conditions, particularly connective tissue disorders.

"Madison is too small for the CT Scan that was scheduled so they want us to come back in two or three months," Destiny Bob said in an Aug. 8 telephone interview adding the Blue Sclera diagnosis - an unwelcome surprise - requires additional optical and genetic testing.

"We don't know now when Madison will have additional testing, so we want to say thanks for the $2,500 donated [so far], and we pulled the fundraising jars until we have a better idea of what is going to happen," Bob said. Initially, the fundraising was to raise enough cash to buy a special protective helmet for Madison following her anticipated skull surgery, which has been postponed until her head grows enough for the CT Scan.

A public health nurse noticed Madison's blue-tinged eyes during a recent home visit, and took the baby and her mom to Owen Sound hospital where doctors told them her blue-tinted eyes were normal. However, at SickKids July 21, doctors said it was not normal and called for additional testing.

"Blue sclera can be caused by a simple vitamin deficiency - that's what we're hoping - or it can be linked to a couple of syndromes and bone diseases," Madison's grandmother, Tasha Dadswell said, adding they are trying not to jump to the worse conclusion, but it is difficult to be optimistic.

"We're trying to find it not scary, but it is, and we have to wait the two or three months for a re-evaluation when she has grown a bit," Dadswell said, adding SickKids doctors are still concerned with Madison's on-going digestion issues.

While waiting to hear if an appeal to the Shriners for help to cover medical costs and expenses of trips to doctors in London and Toronto will be successful, Bob and Dadswell started the gofundme account which raised $2,500 in donations placed in jars at local businesses. All of the stores told the family they will again accept the donation jars when/if they decide to revive the fundraising campaign.

"We have enough [cash] to get through the next few doctor's appointments, so we pulled the jars Aug. 1, for now," Dadswell said, adding they are "very grateful and thankful for the generosity" of the community.

Bob said they have not spent any of the $2,500 donated to date, but have put it in an account for Madison's future medical expenses, including trips to Toronto after being told that Ronald McDonaldHouse has a long waiting list of families with children being treated at SickKids.